Rowena You Are Three

I didn't do a birthday post for Rowena this year. I had all intentions of doing so but confession time...I was having a hard time framing it in a positive light. I am sure some of you are gasping, in a gentrified way, at my bad parenting confession. But three is a hard age, and R has roared into with a vengeance. I also know this has been a rough time for her in terms of adjustment. A new baby sister and "losing me" to the hospital twice in a short period of time has not been easy. However these compassionate understandings are too often lost in the midst of an hour long tantrum, or the demanding whine of a three year old who has no idea what she wants.

When I went to labor with Jude, we really hadn't prepared R. Honestly it was lost in the worry about Jude and my own pit of despair of the Down syndrome stuff. For once, there was not a big rush to get the baby out. I was kind of okay about her just staying put because I had not worked through my own feelings about her having Down syndrome. And I suppose that this manifested in a bit of denial about some of the more practical aspects of giving birth. It wasn't until a week before my MIL came that I started to panic about having some here for the kids, and realizing that R was going to be scared of staying with just about everyone I knew. She had never really been away from me, and barely tolerated going to sleep for H.

Thus when I went from "Oh wow these contractions are getting regular" to "OMFG, I AM IN TRANSITION. MUST LEAVE NOW!" in the time span of about five minutes,  I was in no space to comfort R. I do remember she was sobbing in my MIL's arms reaching for me, and I was only  barely able to say "I love you and I'll be back." But I didnt' come back for a few days and I'm sure that felt like an eternity to my little girl. She couldn't visit me much because she was loud and our neighbor complained about the noise. Plus she would melt down every time she had to leave wanting me to come home too.

Flash forward a couple of months, and she loses me to the hospital again. This time the hospital swallows not just me but Jude. And when she comes to visit, her sister is hooked up to wires. At least no one complained about her leaving tantrums. Even now when we walk, (we live next door to the hospital) she points out that this was where Jude had a boo boo in her nose.

Every time I feel myself losing it with her, I try to remember how hard this has been over. Replaced as the baby with not just any baby but a baby that has special needs and thus gets a lot of attention from therapists, Drs., etc. And of course all these big things are coupled with just being three. Three...demanding, temperamental, whiny, Yes.

But then after her birthday I realized how easy it was to mire myself in that tragedy, that language, and to let that shape the narrative of R. Since this is a narrative, I can take the story and shape it new. Use new words to show this time of R's life. Because there are good words about this time.

R is vibrant, intense, and funny. Her beautiful self is like a vibrating pulse poised on that line between baby and little girl. She is sensitive, feeling all emotions with a kind of fierceness that is breath taking. She whirls and dances. She climbs and runs. She throws her arms out to embrace us, Jude, cats. She laughs like the universe--huge and expansive. She is determined and sharp. She can not be thrown from her path.

Her humor underlines much of her day. The way she says "no, no, no" in a silly voice escalating in pitch with each no. She sings silly songs and laughs uproariously as them. She likes to dress Jude in dish clothes and giggles at how silly she has made Jude look.

In short, Rowena is difficult, and there are days when my patience is so stretched that I feel fragile. But if I can just move beyond that thin feeling before I shatter, I can see the beauty, the humor, the fierceness of Rowena. I remember that she is also a treasured light bringer to our world. She is the baby who saved me from my self three years ago. She is a warrior princess.

Jude Is a Punk

Like most moms who have a baby with Ds, I am inundated with stuff about Ds. Lots of it. I know it comes from a place of love and I appreciate that my friends are thinking of me. A lot of it is...sweet. Some of it inspirporn. But none of it hit me like this did. I opened the link not expecting much to be honest. Being who we are sweet articles about marriage or prom queens really isn't making me feel better. But this link? This link changed my world.

With a little research I found Pertti Kurikan Nimipäivät

The drummer has Down syndrome, and all members of the band have intellectual disabilities as well. There's more here and here. Something happened as I watched the intro to the documentary and the video.

There was still a little bit of sadness in me. Mostly I was okay. Down syndrome Uprising along with the Tri21 Brigade has saved me most days. The work I feel I am doing to make a place for Jude's voice is important and it helped to keep that bit of residue sadness at bay. I've meet people who see the world like I do, and that has helped me to parent Jude the way I parent all my kids. When we got the Ds diagnosis,  I found myself thinking we'd HAVE to do school, Special Olympics, the Buddy Walk. Honestly it was a little depressing to me because those are not things that are reflective of who we are as a family. But I went along because it seemed like that is what one did when one had a child with an ID. Imagine my surprise and joy when I found people who like to swear! Who like OWS! Who want equality for our kids! Who homeschool/unschool! It was incredibly freeing.

But in the nature of honesty and full disclosure,sometimes when I was looking at Jude, I wondered if she'd ever really have the voice that I was creating a space for. I haven't meet many adults with Ds. The two I meet at a conference were very quiet and their moms kind of ran things. I meet a young man at the pizza place the other day and he was pretty great and out spoken...but still I worried. I worried that if we continued to be who we are, beasties incorporated, that maybe I would be cutting Jude out of something. Denying her a future. Was creating a radical beastie with Down syndrome going to serve her well?

And then I watched this. And the last of my fear went away. There was no more fear about her being with us. The way that we are. When I saw these guys, swearing, drinking beer, dancing with women, being awesome rowdy punk guys, I was thrilled. This looks a lot more like me than the prom queens/kings, than the pretty white weddings (and those are great if that's your thing). But suddenly I knew I had to create a world in which Jude is a punk. Where she can wear her ripped up jeans, sport a mohawk say fuck a lot and drink beer. For me this is what equality looks like. It looks like four guys ripping their pedicurist a new one. It's a world where the punk music that create voice against capitalism can also be a voice against discrimination based on disability.

Because finally...finally Down syndrome looked like me. It looked like us.

Restraint and Power

Lucy always came to class quiet and withdrawn. She was not sulky or dull. There was something shimmering there just out of touch. Something she kept tightly held in her soul wrapped up tight like a fist. She was 16, pregnant, and a ward of the state. Like of most of  my kids, I didn't know much about how she arrived at our school. Unless the kids themselves told us we were often left to fill in the blanks ourselves. Some of them learned to trust me and would open up. Most of them came, and drifted away as mysterious when they disappeared as when they arrived.

Lucy won me over. I had a hard time trying to maintain emotional distance with my kids. Not that they were an easy bunch to love. They called me a fucking bitch.They made fun of me to my face. They threw their stuff on their floor. They pushed me until I felt like I was going to explode. I remember on time yelling at a student who kept mumbling that I hated him "If I hated you so much why the hell would I be fighting so hard to get you to write a damn paragraph?" And I did like my kids. Loved some of them. I knew from their stories, from the rare moments when they would tentatively open up their lives to be examined that there were reasons they didn't trust me. Good reasons. It wasn't personal. Adults had been screwing them over for years. 

But Lucy. She was heart breaking. I was pregnant myself, and perhaps that drew me to her. She was like a dying animal on the side of the road. So damaged yet terrified to let anyone help her. She was never rude, and always did her work. She was just a shadow though flitting in and out of my room with the ringing of a bell. I could never tell if she appreciated my small quiet gestures. A new notebook to write in. A pen. A hand on the shoulder. I hope it meant something to her...that maybe she took that small bit of light and held it in her hand.

One day  as the students were shuffling into my class, she came barging in. A tiny girl, one who caused endless amounts of trouble and whom I found really unlikable started to laugh. Lucy headed right for her, and at first I thought they were playing because Brianna, the smaller girl acted like there was a great joke happening. But it was clear when Lucy threw her books across the room that things were not funny. I yelled at the rest of the class to get to the back of the room out of the action. They did, surprisingly, high school kids seem to love nothing more than a fight. They hooted and taunted until I gave them "the" look. All three of us at the front were pregnant. The two girls were pushing and pulling each other's hair. I carefully moved around their flailing bodies to get to the intercom and called for the office.

"What do you need?" the secretary demanded.

"Really?" I thought in my head as the two girls screamed obscenities at each other. "Security! Fight!" I yelled over the insults.

I turned to my class and gestured for them to stay where they were. The girls were circling each other and panting. It was apparently bad enough that the other kids took it pretty seriously and didn't taunt them. Brianna came running towards me and hid, holding my arms so that I was shielding her. Lucy came over and shoved me in the stomach hard as Brianna let go and scurried away and I hit the desk behind me. For a moment, a blinding flash of anger flooded me. All I could think of was Piper in my stomach vulnerable and I wanted to punch that student in the face. I knew I could and I knew she'd go down. I knew I could lie about it and get away with it. No one was going to believe her over me. And I did think all those things in those moment. It is the only time I ever considered hitting a student. I turned my back to her and held onto the desk, riding that emotion until it was gone. Until the compassionate side of me whispered "She didn't do it to you. She did it to get to Brianna." 

It took security 30 minutes to get to my room. At one point, one of my male students managed to grab Lucy gently and get her into the hallway but the assistant principal who waiting outside where it was safe insisted he let her go. Lucy, of course, came right back in, snatched a bottle of overhead cleaner and tried to spray it into Brianna's eyes. I managed to wrestle it out of her hands. When security finally carried her out kicking and screaming, my room was trashed. Desks were lying on the floor, papers were flung about everywhere. The other students came out quietly and began to clean, a few asked me if I was okay. One said "Whoa Ms. Stickney, I thought you were going to hit her for real. I've never seen you so mad!" 

But the thing is I didn't hit her. In that moment, even then, with all the mama bear instinct rising up, I was the one in power, and I knew it. I knew she hadn't meant to hurt me. I knew she wasn't going to hurt me again. Just like all those moments when students swore at me. Stalked out of the room. Threatened me. I managed to hold onto the fact that I was the power wielder in those moments. I didn't need to throw them down. Hurt them. Beat them. Kill them. Grace only comes through restraint.

http://www.wkow.com/story/22081512/2013/04/25/concern-over-student-hurt-by-sun-prairie-school-officer

Piper Loves Jude

As I am cleaning out the kids' play/art room I keep coming upon I Love Jude scrawled on the walls and various bookshelves in crayon. When I ask about it, Piper confesses "I just can't help it! I love Jude so much!" 

Piper was the only beastie with me when we first saw Jude on the ultrasound machine at Dr. Rosemond's. She had named our fetus Skippy and was over-joyed to when the Dr. moved the wand over my stomach to reveal Skippy standing on her head. We grinned at each other because that little thing seem to tell us both volumes about that little being inside of me. Neither Piper nor I knew that this visit would be the beginning a journey through fear and ultimately into joy.

As we left the office, these first snapshots grasped in my hand, I told Piper "Skippy is going to be a trickster."

I didn't let Piper go to the rest of the visits even though she begged me. I just couldn't bare to have her there if we ever discovered something wrong with Jude's tiny heart. Piper was always with me in spirit. Everyday she would whisper to my belly "I love you." And she would tell us "I don't care if Jude has Down syndrome or not she's OUR baby." Piper taught me a lot about love as I struggled with my own ambivalence in those early days. Piper's love for Jude was unwavering and unquestioning. 

Watching Piper and Jude together is rare glimpse into a love story where love comes unconditionally. The last time Piper was having an anxiety attack, Horacio was helping her to breath through it. He told her to imagine something that made her feel better. Later she told me she imagined holding Jude's hand. The same thing occurred to day when she was asked to share something she was grateful for. She hesitated, unsure of the word, so I whispered to her "What makes you happy?" "Jude" she said loudly beaming at her sister.

We talked a couple of weeks ago about her anxiety and she confessed to me that she worries about Jude dying. When Jude was in the hospital with RSV, it really scared Piper to see her with tubes in her nose. For a moment, I floundered because I am scared for Jude too. Right now she's healthy but I am all to aware this can change. So I told Piper what I tell myself "We can't know the future for any of us. But we can love now without holding anything back. We need to bask in this moment. This love." 

Perfection

When I first found out Jude had Down syndrome, my aunt offered to buy me a book. I sent her the link to A Good and Perfect Gift. I wasn't sure if it was the right book. My religion was (is) a rather difficult thing. I was scared to read a book by a theologian, a protestant theologian at that but her title spoke to something deep inside me. At that time, I did not believe that Jude was my good and perfect gift. I wanted to believe that she was of course and I put on a good face. But there were still those nights when I worried that I would never see her as perfect. I could imagine the good. Of course it was an awful, hard good.

The book came in a ragged yellow padded envelope. I read it in two nights. I appreciated Becker's intelligence. Her elegance with language, and the way she wrestled with love and doubt. Even though my diagnosis was a prenatal one, Becker's story was the first story I had read that captured the emotional world in which I found myself living. One thing that held me was when Becker asked her husband if he would take away the Down syndrome, and he at first says "yes" but as the book progresses, they both start to answer no.

I couldn't imagine that in those early days. In the quiet of night, when I allowed myself to feel all the things, I knew I'd erase that extra chromosome if I could. There would be no hesitation. However in the light of day, I could not think about that erasure, it was too impossible to imagine, and it hurt to hold. H challenged me on this..."If we erased it, she wouldn't be Jude." He knew then but would take me a bit of time to know. The Down syndrome is not the completion of Jude but it is part of her. Just like epilepsy is part of Beastie Boy, and Asperger's is part of Camille. These things have shaped them into the selves they are today. Down syndrome though seemed so much scarier. Again that awful good.

A couple of weeks ago, someone I consider to be a dear friend already, wrote about gene therapy and asked what we thought about it. It was in relation to an article that a few people had sent me over Facebook. A protein is shown to be lacking in people with Down syndrome. Early studies suggest that if they could figure out a way to supplement this protein, they could increase the cognitive ability of people with Ds.  It's an interesting idea, and something that Solomon brings up in his book Far From the Tree.  When my friend asked how we felt, most of us in the group responded that it was good stuff. My rationale was simply that if it gave Jude a higher quality of life then I would be all over it. After all, I give Umberto medications for his seizures. Then my friend pushed us to consider if we would radically change our child with Ds's cognitive ability and that is where things got murky for me. And I have spent seriously a month mulling all this in my head.

I keep coming back to "Would you take away your child's Down syndrome if you could?"

There was a time when I used to lie awake wishing Umberto didn't have seizures. I hated them. They were so painful to watch. Seeing Umberto seizing on the floor, eyes open staring somewhere that we could not reach. His limbs stiff and trashing. His hands curled up against his chest. When it was over, I'd hold his body on my lap, waiting for him to return. I would cry then so that when he finally recognized me he wouldn't see my tears.

But we were lucky and the medicine helped. He still had a few seizures and even now that it's been over a year, we won't' start weaning him until it's been three years. In that time, though, I learned to not wish away those seizures. It only made it harder when they came. And now I sometimes wonder if he was one of the kids who had the horrible side effects, would it be worth it? I am not sure. The side effects of the meds that Umberto takes can be very intense right down to full personality changes and a hardening of features. I also don't know if taking the epilepsy away would change who he is. I do think that we made the right choice in medicating him and continuing with all the tests. I mean for one thing, he gets to have this great scifi picture of himself.

What we did with Camille was kind of the opposite of what we did with Umberto. Camille clearly is somewhere on the "spectrum." There are times when it's more obvious than others. When she was two I thought she had Autism because she didn't talk, wouldn't look people in the eyes, and had a thing for lining up trains. But none of these things were extreme and I thought then that Autism would show up stronger (didn't know about the spectrum). As she got older, I meet some people who had kids on the spectrum and started to piece it together. After a really disastrous K experience, I started to think that we need to diagnosis her and get her into therapy right NOW. H wasn't so sure. He pointed out that she wasn't troubled or in pain. She was doing well academically (very well actually). While she had some odd behaviors we weren't troubled by them. We had to accommodate some...she need soft clothes, didn't wear socks, etc. We were a family who valued difference, and didn't like the norm anyway. So we pulled her from school, and the rest is history. No Camille doesn't act like everyone else. She has some quirks that make people uncomfortable. Her hair is a wild mess because she hates combing it and the idea of cutting it sends her into shock. But she's clean and comfortable with herself. I wouldn't change Camille for anything and that means not taking away the Asperger's (if that's even what she has). She is this quirky, self confident kid partly because of this difference. I mean who wouldn't want a kid who randomly decides to act like a cat in public including ear scratches with her foot?

And then there is Jude. Right now I can't imagine Jude being anything but who she is. At four months, I don't know how that extra chromosome is going to shape her. But it's weird for me to even think about her in the terms of having or not having. Mostly she is just Jude. Just like the other beasties are who they are to me. I don't think a lot about their genetic make up. You know I'm busy trying to keep them from going feral. This is not to say I am not conscious of the Ds. I still have moments where I see in the way her eyes crinkle down when she smiles. But that smile is all Jude just my other kids have their own unique smiles.

The markers are there. Sometimes I see it in what she is not able to do. When confronted with a baby her age, it's clear that in some ways Jude is a bit behind physically. These are small things though. I do worry that as she gets older those things might not be so small anymore. But the other people I am meeting who have Ds? Well for them it's just a part of the complexity of who they are...all that stuff that the rest of us carry as well.

A couple of weeks ago, I sat at a table for our Ds support group at a disability expo. I watched a 13 year girl with Ds wheel herself all over the place. Laughing with her friend. Checking out the other booths. And most amusingly flirting with the two teen boys who were manning the Asperger's support group table. The boys were trying to flirt back but it was awkward. This awesomeness just brought it to me again that what it comes down to is that we are all human and that's about the only thing we can guarantee. I wouldn't change Jude's genetic make up any more than I would change the fact that she's human. I will do what I can to make sure she has a good fulfilling life but I am not going to change her to make her someone different.

Why? For the same reason I don't want to change my other kids. What we really seem to be getting at when we come with these questions is this: Would you make your child less different? More normal? Because really isn't that what I feared? I realize now that was the wrong thing to fear. What's to be feared is a world that hates difference and wants to stomp it out. A world that if it does accept difference only accepts it if it comes with assistants or better yet segregation (can't that child be special somewhere else?). Our world does not treat those with difference well. When I read about Ethan Saylor and Antonio Martinez, I realized that what I had to fear was not my child's genetic components but what people would try to do to my child because of her genetic components. Instead of fighting for her to change, I need to fight for her right to be who she is no matter how uncomfortable that might make others feel. Jude has the right to not have anyone, including me, ask if her Down syndrome should be taken away. Because in the end what matters is that she is allowed the space to grow into herself.

The Pains and Joys of Friendship

Camille has never been one to have an entourage. In fact, making friends was not an easy thing for Camille.When she was in K, I admit to feeling pretty pained as she struggled to talk to other kids. She always seemed to go after the blond girls. The ones who were clearly setting up for a life of bitchery. As the rejections piled up, often delivered in the nastiest way a six year old could muster, I would cry a little inside but paste a big smile on my face. "Oh well!" I'd chirp (and you can imagine my version of chirping) "Their loss." And I'd cringe because that's what people used to say to me, and frankly, it felt like my loss, thank you very much. But Camille never paused in her pursuit of friends. The set backs weren't set backs to her. Only to me. It all came to together with a resounding emphasis one day at Barnes and Nobles. Camille was playing at the Thomas Table (a fact she will most hideously deny today) when two little blond girls approached. They were the kind mentioned above. Camille smiled at them and held out a train. The girl who was clearly grooming herself to be the mean one said "What language do you speak?" I bristled because the racism of it (whoever says kids can't be racist haven't lived in my world). Camille smiled brightly and said "Pony Rainbow language" and went back to the trains. The girls were a little stunned not sure how to react to that bit of quirkiness and I realized that Camille was going to be alright. It was my own shit I had to work through because even thought I was in my 30s I was still carrying the pain of all those rejections so many years ago.

But Camille is Camille. At nearly ten, she is incredibly confident. She doesn't care what people think of her quirks. She has two close friends and she's pretty content with those two. I used to feel like I had to push her to have more but these relationships are both rich and good for her. The two girls understand Camille and accept her. What more can you ask for in friends? Certainly not a need for more especially when Camille is content.

Piper, however, is not content. Piper loves people and she wants a lot of friends. But other kids don't seem to like Piper. She has two good friends as well and again they are wonderful girls (in fact one girl is the sister to one of Camille's friends). Piper loves them but she wants more. She is not content to go to park days and read if none of her friends are present. She wants to play to be involved. And she gets rejected a lot.

I used to tell her "Piper you have to be friendly if you want people to be friendly back. Talk to the kids. Put yourself out there." Then she did at a park day a couple of weeks ago and the girl she spoke to ignored her and walked away with what Piper described as a "nasty look." Talk about your bad parenting moment. I knew that what I had told her wasn't true. Sometimes you can be the nicest person in the world and people will still treat you like dirt. But here I had held that out to my daughter as truism. A sweet platitude.

Piper's anxiety has exploded over this. We've had a few issues that I won't fully disclose but let's just say "NOT FUN FOR MOM AND DAD." She's started to be scared of the dark again too. I think it's because she cannot fully articulate the question "What's wrong with me?" Piper isn't like Camille. She doesn't have that self-confidence to just be herself. Sometimes I feel like I failed her. I am worried that all my own insecurities about friendships have effected her. The times I cried because I felt pushed out of mom's circles. The quiet voicing to H that I had said a bunch of dumb things and was convinced that everyone hated me. I know Piper has seen me sitting alone at Park Days while the other mom's gather in different groups. I wonder if she has internalized all those things. And I feel like I should just sign up for worst mom of the year.

H is more practical about this. He says "People are jerks and we shouldn't be telling her to put herself out there. We should be telling her that sometimes people are assholes and they're mean." And I know he's right (without the asshole part of course) but it's sad to that to my funny bright girl. It hurts me deeply that she experiences so much rejection, and again I am not sure where this hurt is mine and where it is hers. I think she's lovely of course. I can see how she puts a grumpy defense at times, and shuts people out before they can get close. But I also see her so excited to share something with someone and see that someone shut her down. I see how she's creative both with pictures and words. She has a lovely smile and a sweet nature. I want to shake the little girls who are mean to her and say "What the hell is wrong with you? This is a wonderful person before you."

I wonder why she can't be happy with her two friends whom she loves and who love her.

Mostly I feel helpless because this pain is so close to my own experience. I don't know how to help Piper because I never learned how to help myself. This is the hard part about parenting. The not knowing. The stumbling because you never learned. I don't know how to see the world as Camille and Horacio do. I am not effortlessly popular as Umberto is. I am like Piper. I try too hard, and then lash out when rejected. I cry even now when I think people hate me. I can never a social gathering without agonizing later about everything I said and did. And now I am at 40 trying to figure out a way to reach past my own hurt, my on ineptitude at handling rejection to help my sweet girl be stronger. This is when parenting becomes about taking those roads unknown even to yourself and wondering if at this age one can map a new route.

A Manifesto

1. A statement for NDSS and NDSC regarding how to help us move forward in seeking justice for Robert Ethan Saylor and all people with Down syndrome:
   
   The NDSS and NDSC have failed to zealously advocate for our community in the aftermath of Ethan Saylor's homicide. It has been three months, and there has been NO #JusticeforEthan.
   
   As our largest national organizations, you have the resources and voic...e to help our community do the following:
   
   1) Identify the entities capable of conducting an impartial investigation of Ethan Saylor's homicide, and place pressure on them to move this case forward.
   
   2) Contact appropriate media outlets in order to bring more attention and awareness to Ethan Saylor's case, and tell us who we should be contacting.
   
   We urge you to marshal your resources, galvanize the community, and take action beyond mere letters. The DOJ and MD Attorney General have been unmoved by your efforts. Ethan's death affects all of our families; we all must fight.
   
   We will not forget. We will not stop asking for #JusticeForEthan.
   
   - The T21 Brigade and Down Syndrome Uprising

   
   

   Please go like: 

   
   

   • https://www.facebook.com/pages/T21-Brigade/233641746774249?fref=ts

     
     

     https://www.facebook.com/DownSyndromeUprising/posts/641149402568812?notif_t=like

In Which I Publicly Reject Down syndrome

Today I spent some time while nursing my sweet babe reading No Pity. I'm reading the horrible sad stories about people, young people, who are forced to live in nursing homes cut off from other people their age. Lonely and isolated, they are treated as if they are ill. As if they have a disease, and perhaps even worst as if they ARE a disease. They have been stripped of their humanity as they are denied the freedom to make their own choices about their lives. I looked at my sweet girl and my heart broke a bit imagining her in an institution. Cut off from a normal life filled with friends, independence and freedom. The freedom to succeed yes but also the freedom to screw up. To get hurt. To learn from those moments. You know life.

Later, I ended up in a conversation that hammered this home because the person I was arguing with saw us asking for special rights for Ethan Saylor. And suggested training instead and a Med id bracelet.What's mind blowing is that conversation occurred in the comment sections of a post H shared. A post with a link to an amazing blog post that was talking about this very thing. 

And it hit me hard. People see Jude as a disease. When you call her a "Down's baby" she are inferring such a thing whether you intend to or not. In fact, Jude does not even have a disease. Jude is a human who happens to have an extra chromosome on the 21st Trisomy  (Camille has pointed out that she might be considered more human than the rest of us but I'll save that heady thought for Camille to ponder). Jude is not even sick. In fact, she's pretty damn healthy. There is of course a possibility that because of her extra awesome sauce, she might face extra health challenges but that still does sum total her to genetic extraness. Just like the fact that cancer might run in your family does not sum total YOU to cancer. 

I decided this afternoon that from now on I'll tell those who need to know that Jude has Tri. 21. I like that better. It's allows a conversation because most people won't know what the hell I'm talking about. And I'll get to sound all sciencey which I adore. But mostly it will be a clear statement that Jude does not belong to a syndrome. 

Why am I harping on this you might ask. Well because it's important in terms of the Ethan Saylor case. You see there is a call from our national organizations for more training. They throw in the need for an independent investigation of course but they're not really pushing for it. This concerns me. Why? Because what is training going to do in the end? Are we going to reinforce the idea that our kids ARE "Down's kids" as opposed to Down syndrome being only a part of who they are? I saw one blog where someone suggested that the should police know what people with Downs look like (maybe they'll send the horrible picture from the "I Am a Nurse" page). Seriously. I'm pretty sure training is going to reinforce stereotypes as opposed to knocking down walls.

Because here's the thing (and yes I'm crazy ass liberal) I don't think the cops need more training. They already KNOW they're not supposed to brutalize those they are sworn to serve and to protect. They also know they're not supposed to put a handcuffed person on their stomachs. They are trained already. The off duty deputies who participated in the homicide of Ethan Saylor KNEW they shouldn't be doing the things they were doing. I don't think that means they intentionally killed him but it certainly bespeaks to something. I think that something is that they didn't see Ethan Saylor as worth bothering with. He was other. Different. Not being quiet, docile. He wasn't following the standard procedure for some with Down syndrome. He wasn't being sweet. It's not surprising though because it's pretty clear why they thought this way when you read the official report of the investigation (conducted by the same department that employed the deputies). According to that report Down syndrome killed Ethan. 

With that sentiment expressed, suddenly no one is indicated in Ethan's death. How can you prosecute Down syndrome? And that's why we have to do more than training. This why I am committed to not just fighting for an independent investigation for Ethan but for civil rights for people with Down syndrome and other mental disabilities. Because the reality is that as long as a homicide can be pinned to a genetic make up the less likely it is that people will feel not  compelled to mistreat, abuse, rape, and kill our children. The time is now. Stand up. Fight. 

Want to read more? Here's an incredible write up of what I've been thinking about for days and that lead me to think about this post. She says what I'm fumbling for here much clearer: http://gardenofmyheart.wordpress.com/2013/04/12/uncomfortable-truths/

And want to do more? Head over to With a Little Moxie who has a whole operation going on...

One Love

A year ago today, I took one final pregnancy test convinced that I was not going to get that last beastie. As I sat watching the test, my heart still hoping because I'm a fool, a faint line appeared. I grabbed the stick and ran out to the kitchen. Holding it up in the sunlight that filtered through the kitchen window, I could see that second line. I showed it to Beastie Boy who detected a second line. I photographed it and showed it to a group of close trusted friends. There would be many tests to come but that was the first indication of Jude.

I was scared. We were insane. Five BEASTIES. While H was finishing his PhD? It was craziness but underneath it I was overjoyed. I don't know why I had such an intense desire for this child but I felt with a quiet desperation that she should be in our life. And then we got the news.

And I felt so betrayed by the universe. Like IT had just played the world's worst gag on me. This is what you get, I thought, for always wanting more. I wavered between wanting her with an aching desperation to thinking that perhaps it would have been better if she hadn't been conceived at all. But when I thought too much about her as nonexistent it hurt. I could only push my tongue on that pain very tenderly. Because I did want her even with the extra [ness]. The thought of there being a not her was like a black hole of misery. Late at night even as I worried I wouldn't love her, I would rub my stomach and beg her to live. "Please baby, " I'd think, "I need you. I will learn to love you. I know I will." It was an incredibly lonely time because I didn't dare whisper these dark nothings to anyone. I had to carry them like a tumor inside my soul and my heart. Sometimes I thought their tar substance would poison me and I'd sob in the living room so that I didn't wake up H or R.

And now she is here...sleeping on my chest. The smell of her engulfs me, surrounds me, drowning me in the sweet joy of HER. She is so perfect and beautiful. So smart and so funny. She looks at me with utter trust because she knows I love her.

But this love is a big love. It has expanded to include a whole community of people. People with Down syndrome and those who love them. I read about :Ethan Saylor back in January. I remember sharing the news story and being so sad that it wasn't making the rounds. I felt the story deeply because here was a mother who had lost her beautiful son. Her good and perfect gift. He was taken from her too early because he brutalized by three off duty deputies acting as security guards. All over a 12 movie ticket. When I read that he called out for his mother, my heart shattered. I have sobbed over this story again and again because Ethan Saylor was my son. He was OUR son. All of ours. And when I am holding my sweet girl, I feel Ethan's spirit. It's a woo woo statement I know but there you go. I feel him.

The radical Christ I choose to emulate commanded us to love all as we love God. It is indeed One Love. One Heart.

Tonight I joined my community to remember Ethan. Those of us with kids who have Down syndrome and those of us who don't. We all know how to love, and we showed that as we remembered Ethan. And then many of us went and Twitter bombed everyone we could think because quite simply we will not forget. Ethan was a human being. It's really that simple. He was killed not because he had Down syndrome but because some people did not see him as human. It happens all too frequently with people who are disabled just as it happens to women, the elderly, the poor, those of a different "race," gays and lesbians. It is time that we step up to one love, to one heart. I am not longer willing to lay down my sword. Jude is too precious to release into a world that does not see her as human. Until she can speak her liberty, I will speak for her. And once she can speak, I will lift her high so that her words can pierce the hate.

 Note: The Twitter campagin is in full swing. If you want to join in the fight: http://www.withalittlemoxie.com/2013/04/its-about-human-rights-justiceforethan.html

For a truly excellent commentary: http://gardenofmyheart.wordpress.com/2013/04/12/uncomfortable-truths/

Meaning

I've spent the last few days outside in the sun with my family and friends. Spring is finally here and I am relishing the sun and a bit of freedom from the computer world...the real world in some ways. After reading the comments from this article, I had to step away. No I shouldn't read the comments but sometimes it's like watching a car wreck...you know you should look away but you just can't. I learned that a lot of people think Jude shouldn't exist.

It kind of bummed out because you know I think she's pretty damn awesome, and I think the majority of people who have meet her think she's pretty awesome as well. In fact, I was thinking about all those who people who felt I had an obligation to abort my sweet girl because I knew beforehand she had Down syndrome, as I chatted up some people waiting in line with us on Friday. So I told them matter of factedly that Jude has Down syndrome and that's she's pretty damn awesome. They asked me some nice questions, and we got to talk about Down syndrome. And I told them about Ethan Saylor too. I am not sure how I feel about Jude being the face of DS for these people but I realized that if I don't say something people just won't KNOW and that's become really damn important to me.

It happened again at a friend's brunch on Saturday morning.   A woman I were talking to had no idea who Ethan Saylor was. Luckily she was pretty outraged but still she didn't know. I guess it's not surprising when I read comments like I read following that article. When people don't seem to think people with DS should even be alive, when the New York Times doesn't even think hate speech towards people with DS should be erased (unlike other kinds of hate speech), then why is it shocking that we can't get any coverage on Ethan Saylor's death? 

Sometimes I have to just step away because it makes me really fucking sick. Excuse me but I think some strong language is warranted because it seems to me that some people on my Facebook feed are more concerned about a cop murdering a dog than about them murdering a young man named Ethan Saylor. I'm not advocating for the abuse of animals but there is something wrong with a world where a story about a cop murdering a dog gets more shares than a story about a young man being suffocated to death in a movie theater. 

I try to be positive. I have five good reasons to see the world as a beautiful place but sometimes I wish I could lock them away so that they don't have to see the ugliness of humanity. Which kid would you pick to be worthy to live? 

The Feeling of Raw

Sometimes in the afternoon, I bring Jude to our bed and lie down to nurse her. I love the way her small body fits so closely into my mine. She watches me intensely as she nurses her eyes focused on mine. I don't want to look away; afraid that if I do I will miss her imprinting on my soul. I love to stroke her hair, run my finger down her cheek. I have to touch her to make her real sometimes. The intensity of my feelings towards this tiny being scare me because I feel that to lose her would destroy something inside me. And because I feel guilty--as if I don't deserve her.

Walking around in public with her against me, usually sleeping, her warm breath on my chest, is like walking with my skin turned inside out. I am hyper conscious of every glance our way, of the words people use when they talk about her. I bristle at the inquisitive looks I imagine on the face of strangers. The words of pity that come from people at times rubs against my inside out skin leaving angry rashes.  Crumbs are not what Jude deserves and I feel like we are often handed these crumbs as if they are the finest confections.

When I am in this skin, every hurt, every insult, every slight to every disabled person stabs me. I am doubly wounded as I was once this person who said stupid things in ignorance. I want to time travel so that I can go to each person I hurt and say "I am so sorry. I know now." But then I am stricken because I do not know. I can never fully know. I am not disabled. And I feel this chasm grow between Jude and I. I wonder if I will be able to build a bridge to reach her. If someday, she will say "You don't know. You don't belong to my world."

I am full of rage. Sometimes I am walking around strung taut--an unbearable pressure. I feel as if the slightest touch, a caress like a feather will break me, and I will explode in thousands of pieces. 

Perhaps I am over-sensitive in this rawness that came ever since someone told me that my baby had Down syndrome. I am not sad. I even want to write a note to the Dr. saying "Thank you for giving me some of the best news in my life." Jude is not a burden. I do not wish her Down syndrome away. It's not a thought I pursue. Jude is quite simply Jude. I am everyday washed fresh in her presence. I am shining like a hard diamond in the gift of her gaze. My love for her is stretched out to embrace the universe. But I am fierce and raw and angry because the world is hostile.

Don't Let My Silence Fool You

I'm still pissed but sometimes I have to take a break and breathe. I spent the weekend holding my baby, smelling her hair, feeling the way her tiny body nestles against mine at night, admiring the way her eyelashes fall against the smoothness of her check. Bliss. But I have to admit that all weekend I felt the bittersweetness of such bliss. Because you know there are mom's out there who no longer have their child to bliss out over. Damn it. It's bad enough that I have live in fear of cancer, early onset Alzheimer's, febrile seizures now I live in fear of what the cops or other people who don't value the humanity of my child might do to said child. I live this fear doubly because I feel for my beautiful son too. We know how brown people are treated in this country. Espcially brown boys.

And of course since I never really disengaged, I did read this weekend: No Pity by Joseph Shapiro. It's a great book, interesting and informative. But I'm still waiting to find Jude there. He mentions "r------" people every once in awhile (and yeah I know the book is dated but it still rubs me the wrong way). There are pinnacle moments for each group he talks about...that makes good journalism....but I don't see one for Jude or for people like her. Maybe it's still coming down the line...but I kind of think we have one staring us in the face. Damn it, someone killed one of our OWN. And our national groups are sitting on their hands talking about training and sensitivity. Why are we not being urged to take the streets like they did at Gallaudet University? Why are we not staging sit ins as disability rights activist did in 1977?

I commented on Down Syndrome Uprising that we had our "hoodie" moment. For me, I believe it lies in our stereotype in the happy person with Down syndrome or in the brilliant words of Atypicaldad the eternal infantilization of people with Down syndrome. This is when stereotypes kill. Just like they killed Trayvon Martin. Just as surely as a brown man can not flip his hoodie up neither can a man with Down syndrome get upset.

We are living in a world where people with intellectually disabilities are not treated equally. They are diminished and not valued. They are reduced to stereotypes that strip them of their humanity in the eyes of others. They are beaten, given substandard medical care, they undergo forced sterilization, they are not given the chance to perform meaningful work (including in the arts, etc), they often do nhot have a chance to gain higher education. Our world is not hospitable to those with intellectual disabilities. This is not the world I want for Jude.

When  are our national groups (we have plenty to choose from) going to call for marching in the streets? Is there a way for our community to do this on our own? Why aren't people angry? Like EVERYONE?  I'm personally tired of cute pictures of kids with Down syndrome (okay not really cause hey cute kids) and I'm really sick of the inspirporn. Instead I want some of kind of clear leadership organizing all over the globe. Can't we bus people into protest in Maryland? Instead, a bunch of angry parents (yay us) are keeping the fire burning. Demanding justice. Because again...We are Ethan Saylor.

Take a moment to create some tension.

A Day In the Life--March 27

Today I woke up around 8. H was bringing R to school but I still got up. This is my sweet morning view. Babes.  

R likes to helps carry things out for me...either a diaper or our Bobby. I love her sleep morning face. Lately she's been really unhappy so these sweet moments are even more precious.

Piper was about to leave but I got a quick and a peek at the note she prepared when she thought we were still sleeping. Can't forget the kitties.

Breakfast for R and mama....

And breakfast for Jude... 

A bit of a morning nap. She usually wakes up, nurses and takes a quick little nap each morning.

While she naps, I work on some activism stuff...remembering Ethan Saylor in small ways as I try to spread awareness. I spend most of my breakfast time looking on line for articles detailing abuse against people with Down syndrome, spreading the word on what I know, and writing about these things.

R getting ready to bring daddy to work. H usually bikes but I had picked him up on Monday because it was so cold so he needed to get this morning.

Camille manages to get up in time to give her papa a hug goodbye.

Jude is ready to go!

Dropped H off and headed home. 

A moment of beauty in a hectic day. These days when I walk around with my camera remind me that I need to stop everyday and look.

 I come home to find Umberto up and loving cough torturing cough our cat.

R slowed down too and found a beautiful rock in the driveway.

Camille reads a book. She spends a lot of her day reading about all kinds of things. Today the choose was about wizards and dragons.

This. Repeat five times today.

Cleaning up for therapy. Therapy is kind of a pain because I have to clean. I try to see it as a good thing. But I really hate cleaning. Right now our therapist is I believe an OT who comes in every two weeks. Jude is on schedule with her development so we don't really need a physical therapist yet. 

 Jude was a rock star today. She showed off all her skills and even rocked out her tummy time. Therapy mostly means Jude lying on the floor playing. The therapist will give her toys to hold, and gives me advice on encouraging her to do things like rolling over, opening up her hands more, etc. She mentioned bringing the PT by so I can ask some questions about our sling and about a Johnny Jump Up.

 Jude takes a much needed nap on mama...therapy wears a baby out.

 More driving...on my way to pick up Piper from school. She has a dentist appointment.

She's not very happy when I get her. She turns to Jude for some comfort.

 Dentist time!

 Improvised emergency nursing session before appointment.

After the appointment, we stop off at home so Piper can rinse her mouth and I can pick up my wallet. Then it's back on the road for some supplies for dinner.

Jude shops in style while R lusts over cookie cakes.

 I realize I have not eaten since breakfast. Whoops. Have a very late lunch.

I attempt to take a nap since I'm beat. At first, Jude thinks this is a super idea.

But then it just really pisses her off. This happens so rarely that it's worthy of documentation.

R thinks she wants a nap but mostly she wants to lay around, pick at Jude and just generally keep us from napping.

I finally convince Jude that she would LOVE to nurse which she does....

But not enough to go to sleep.

Finally success....sweet baby. I love sleeping with Jude. These moments are like she's part of me again, melted against me. I feel her so closely at these times as I hold her in my arms. My beautiful gift.

Up. Coffee. Needed.

 Taking a page from H's philosophy of cleaning...doing some dishes while I wait for the coffee to finish brewing. I also get the kids' pizza into oven. Why yes, yes I do feed my kids frozen pizza for dinner. With salad of course.

 Another blog entry on Ethan Saylor.

Late night math. 

Once H is home, we relax into the evening. The girls usually draw or read books. Umberto draws tonight which is unusual. H gets some snuggle time with Jude. 

Piper is really crazy about Jude like she was R. She loves babies. Jude loves her too.

H and C play a game from Camille's Wicked History of the World book. We are all rather horrified at the nasty things that happened to kids in the past. Camille says at one point "I just guess the worst thing imaginable and that's the answer."

R waxes sassy while H and Camille play. Jude decides to have a snack.

 Time for bed. Med prep time. Umberto is on two different meds right now. We're weaning him off one. Allergy medicine for Piper and Umberto and melatonin for Piper. Whoo.

 Umberto steals my baby. This happens often. I kind of love my soon to be 13 year likes to steal the baby but he can't keep her. That snugly goodness is all mine.

Girls getting ready for bed. Note over abundance of stuffies.

 What I see as I get ready to go to sleep. What loveliness.